Alice: Welcome to Wonderland

My entire life, I've noticed people who have kids with disabilities.  There were a couple families at church when I was growing up who had children with different special needs: spina bifida, cerebral palsy, autism, Down syndrome... the list goes on and on.  I saw these families in many public places a lot too.  And every single time I saw a family like that, I thought, "That will never happen to me.  I couldn't handle it and God knows that."

When Lucy was born perfectly healthy and typical, I thanked God that she had no abnormalities and I thought, “There’s a reason she was born perfectly normal.  I couldn’t handle anything being wrong—and God knows that.”

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Our beautiful daughter Alice Dorothy was born on March 17, 2018.  When I was pregnant with her, we had our routine 20-week ultrasound where the doctor can tell the gender.  We didn’t want to know.  We wanted to be surprised at her birth, just like we were with Lucy.  We saw her on the ultrasound as she moved around effortlessly and we caught a little glimpse into her beautiful face.  The doctor said everything looked perfect!  We could not wait to meet this new baby.

At 36 weeks, my doctor discovered that the baby was breech.  I had to come back in every week after that for an ultrasound to see if she had turned.  If she didn't, I'd have to have a C-section.  At each appointment, we got an up-close-and-personal shot of the baby.  The doctor again said she looked perfect—but she remained breech.  I scheduled my C-section for March 22, which was two days before her due date.

Well, at 39 weeks, I went into labor while I was walking around the mall with Lucy.  I guess our little girl just really wanted to celebrate St. Patrick's Day with us.

My C-section was very easy.  I'll never forget the moment she was born.  They pulled her out and brought her to the table next to me to get her cleaned up quickly.  Tim went over to look at her and then yelled to me, "It's a girl!"

That was one of the happiest moments of my life.  I would have been very happy if it had been a boy, but man... I really wanted a girl.  I loved having Lucy and experiencing everything that mom-of-a-girl life had to offer.  And I really wanted Lucy to have a sister.  So when Tim told me it was a girl, my heart was so happy.  I cried so many happy tears.  I was so thrilled to have another daughter.

After getting her cleaned off, the doctor brought our baby over and placed her on my chest.  She was absolutely beautiful.  Head full of dark hair, little round head, tiny nose, tiny mouth and big blue eyes—just like her sister.  I fell in love.  Tim and I were so happy.  We named her Alice Dorothy.  Alice is a classic name we’ve always loved, and Dorothy is after my amazing grandma.

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When I got into a recovery room, a doctor came in to evaluate Alice.  I heard a few whispers but didn't think anything of it.  A few moments later, the doctor came to my bedside.  That's when our lives changed forever.

“Hi guys.  I’m a doctor from the NICU.  I’ve been evaluating Alice, and I wanted to let you know… she has a few markers that are consistent with Down syndrome.”

I felt like someone told me my entire family had just died.

I remember yelling, “What?!”  I put my head in my hands and started bawling.  I looked at Tim next to my bed.  He was doing the same.  I was devastated.  Completely and utterly devastated.  I felt like I was in a nightmare.

The doctor then brought Alice over to my bed and started pointing out some of her features that were oftentimes indicative of Down syndrome.  I don’t even remember half of the things she said because I was in a state of shock.  She said something about how she has a flat face and small ears.  Something about her almond-shaped eyes.  Something about a crease on the palm of her hand.  I didn’t even comprehend what she was saying.  I just cried and cried and cried.

The doctor asked me if I had done any prenatal testing to look for any abnormalities.  I said no.  We had chosen not to do any testing with either pregnancy.  This was for two reasons: (1) Nothing would come up as “abnormal,” right?  That doesn’t happen to us.  (2) No matter what was shown in prenatal testing, we would never abort our child.

My entire body felt numb.  How could this happen?  Tim and I were only 32.  We were young and healthy.  I had taken my prenatal vitamins for months leading up to getting pregnant, and then every day of the pregnancy.  This couldn’t be true.  This stuff didn’t happen to us.

I know it sounds crazy, but I didn’t think Alice looked like she had Down syndrome.  I looked at her and looked at her and I just saw our beautiful baby.  I asked the doctor if it was 100% for sure that Alice had Down syndrome.  She said, “No, we won’t know for sure until we get the results of a blood test.  That could take a few days.”

A few days?!  I had to wait a few days before knowing if my baby had Down syndrome?!  I told Tim maybe she didn’t have it.  Maybe it was a mistake.  Maybe this was just a nightmare.  He told me, “Ann, I really think she has it after looking at her again.”  Maybe I didn’t see it because I didn’t want to see it.

  

  

  

I started wondering how this could happen.  I thought things like this only happened to “older moms” or if it “ran in your family.”  (I have since learned this is not how Down syndrome works at all.)  I thought it must be my fault.  I must have done something wrong to cause this.  Maybe a medication I took before or during pregnancy.  Maybe I had a drink before I realized I was pregnant.  Maybe something was wrong with my body and I didn’t know.  I kept crying and apologizing to Tim for causing this.  He told me I didn’t cause it – it’s just something that randomly happens to people sometimes.  I didn’t believe him and I thought it must be my fault.

The first few days after Alice arrived were really dark for us.  I was in a complete state of shock, disbelief and grief.  This was not supposed to happen.  This was not the life we envisioned.  This was not the child we were supposed to have.  People were texting, calling and emailing me asking how things were going.  I couldn’t even reply because I felt so numb.

I asked the hospital staff if I could talk to a geneticist or someone like that so I could see if anything I did or didn’t do caused Alice to have Down syndrome.  They sent a really nice geneticist into my hospital room.  I told him about all of my concerns and told him that I needed to know if I caused this somehow.  He patiently listened to me and then told me that nothing that Tim or I did or didn’t do caused this.  Down syndrome simply happens in about 1 out of every 700 births.  It occurs during conception when two copies of chromosome 21 fail to separate.  This results in the baby having three copies of chromosome 21 in each of its cells.  This extra copy of the 21st chromosome that causes Down syndrome can originate from either the father or the mother.  It is not something that can be prevented.  It’s a chance happening and occurs as a random event during cell division early in fetal development.  Down syndrome has nothing to do with anything the mother or father did before or during pregnancy.

This made me feel a little better, but I was still left feeling completely and totally overwhelmed.  I didn’t know anything about Down syndrome.  Not one thing.  I didn’t know anyone with Down syndrome.  I didn’t know anyone who had a child with Down syndrome.  I didn’t know anyone who had a family member or friend with Down syndrome.  I didn’t know anything.  The only perception I had of Down syndrome was that it was horrible.  I kept picturing Tim and me being 90 years old and having 60-year-old Alice still living with us, completely dependent on us for everything.  This is not the life anyone envisions or plans for.  I remember thinking this is the worst thing that could happen.  I may have even said that out loud.

A few days after Alice was born, Tim wrote a blog post about our initial feelings.  He described everything so accurately and perfectly.  (If you would like to read it, just let me know and I'll send you the link.)

I didn’t think I could do this.  I kept saying, “I’m not equipped to handle this.  I’m not equipped to handle this.”  I thought there must be some mistake.  God wouldn’t do this to me.  Why would He give me a child with a disability that I knew nothing about?  To say I felt overwhelmed is an understatement.  I felt in my heart that I didn’t have what it took to take care of a child with special needs, let alone Down syndrome, something I was completely unprepared for.

I talked to my mom and dad about my feelings.  I sobbed and sobbed and told them I couldn’t handle this.  I didn’t have what it took.  I wasn’t equipped.  I’m not the right person.  They kept saying that I would be given everything I needed.  That God would take care of me and Alice.  That I would be able to give Alice an amazing life, just like we were already giving Lucy.  I couldn’t believe this because I didn’t know how it would happen.  How was I supposed to handle something so big and unexpected?  I didn’t have what was required.

Everything I need

A few days after Alice was born, Tim and I felt so disconnected from her.  We were still in a state of shock, denial, confusion and grief.  I was sitting in my hospital bed crying when our new nurse walked in.

“Hi, I’m Dani.  I’ll be your nurse,” she said.  She was a beautiful girl in her mid to late 20s.  Long, dark hair and a very pretty smile.

“Hi.”  This was all I could say.

“Are you OK?” she asked.

“No.  I think my baby has Down syndrome.  I’m devastated.”

She looked at me with sympathetic eyes and said, “Oh, I completely understand.  I have a twin brother with the same diagnosis.”

I could not believe my ears.  I thought I must have heard her wrong, so I asked her to repeat herself.

“I have a twin brother with Down syndrome.  I know it’s not the life you envisioned.  But… it’s incredibly humbling growing up with someone like that.”

I was stunned.  Five minutes earlier, I hadn’t known anyone with Down syndrome or anyone who knew anyone with Down syndrome.  Now, here I was, listening to my nurse talk about her twin brother with Down syndrome.  I couldn’t believe it.

Dani went on to tell me that some people with Down syndrome are completely dependent on other people for a long time, but many others grow up to be healthy, independent, amazing, normal people.  She told me that she had been taking care of Alice in the nursery for a little bit, and Alice was going to be one of the latter.  She said Alice was healthy and thriving already.  At that point, I think I breathed for the first time in two days.

Dani, Tim and I sat and talked for a long time.  She had so much insight about Down syndrome.  She told us that her twin brother is just a normal guy.  She said she understood our hesitation to embrace Alice’s Down syndrome, but it was actually not a huge deal.  Alice would go to regular school, have regular friends and do everything Lucy would do—just maybe a little bit later.  I could not believe what I was hearing.  My perception of Down syndrome was that Alice would be ostracized from her peers, have tons of health problems and be completely different from everyone else.  Dani’s words made my heart light up for the first time since we received Alice’s suspected diagnosis.

I asked Dani if I might be able to talk to her mom—since her mom had walked the same path I was about to embark on.  She said, “Sure!  She actually works here too, just a few floors down.  She can come right up.”

I looked at Tim and smiled for the first time in a long time.  Dani’s mom worked right where I was and could talk to me right now—when I was the most vulnerable and when I needed it the most.  I knew that was not a coincidence.

Dani’s mom, Val, was there in a few minutes.  She walked in and gave me a huge hug.  That was the only thing I needed in that moment—and I got it.

Val and I talked for a long time.  I asked her every question racing through my mind.  I told her I thought it was my fault.  She said it wasn’t.  I told her I was afraid Alice would be ostracized.  She said she wouldn’t and that it would likely be the opposite.  I told her I was afraid Alice would still be living with us when we were 90 years old.  She said she wouldn’t.  And she told me not to worry about the future—with any of my kids.  Just enjoy them.

When Dani and Val eventually left the room, I breathed a huge sigh of relief.  That was the first moment that I felt like… maybe I can do this.

After that, I found the strength to begin getting back to people who had lovingly reached out to congratulate us on our little girl.  I called my sister back, after she had called me about 1,000 times to see how I was doing.  I couldn’t believe what she said.  She told me that her next-door neighbor on one side is the president of the Down Syndrome Association of Greater Cincinnati—and her next-door neighbor on the other side is a physical therapist for Help Me Grow, which is a program that helps kids (birth to age three) who need some extra help.  Again, I couldn’t believe what I was hearing.  My sister wanted to know if they could reach out to me.  I said of course.  Very quickly, I had a stack of books and folders at my bedside with information about the Down Syndrome Association of Greater Cincinnati, Help Me Grow and so many other things to help educate me about Down syndrome.  As I flipped through everything, all I saw were extremely adorable kids in normal schools doing normal things.  And, oh yeah, they happened to have Down syndrome.

When Alice was three days old, I finally found the courage to send out a big email and tell everyone about Alice’s suspected diagnosis.  I was crying so hard as I sent the email because it was something I never thought I would have to do.  It broke my heart.

But the responses we got were nothing short of amazing.  People were so incredibly supportive and loving.  Beyond that, I can’t tell you the amount of responses I got that said, “Oh my gosh, my [cousin/friend’s daughter/nephew/niece/etc.] has Down syndrome.”  I couldn’t believe how common Down syndrome actually was.  I had no idea. 

·        My friend Cheryl told me that her friend Leigh Ann has a little boy with Down syndrome.

·        Tim’s uncle Don told me that his friend is the associate dean of research at OSU and his PhD was on Down syndrome.

·        My sister-in-law Elizabeth told me that her friend’s friend has a little girl with Down syndrome.

·        My sister-in-law Sarah told me that she has two coworkers who have kids with Down syndrome.

·        My friend Meghan told me that her friend Missy has a little girl with Down syndrome.

And the list goes on and on… I couldn’t believe how many Down syndrome connections I was making in such a short period of time.

I started to realize that maybe my parents were right.  Maybe God would actually give me everything I needed.

A beacon of hope

After about a week, we got discharged from the hospital.  Luckily (or not?), I was used to long hospital stays since we had been there for a week with Lucy’s birth too.  It was such a joy to be home and start settling into a “normal” routine again.

I had just started wrapping my head around the fact that Alice had Down syndrome—but I was still very much grieving.  It’s a grief you can’t imagine unless you have lived through this experience.  You have to grieve the child you thought you were going to have before you can move forward.

When I got a spare second at home, I began reaching out to everyone who had told me they knew someone with Down syndrome.  Every single person who had a child with Down syndrome responded to me very quickly.  They all said almost the exact same thing: “You just hit the jackpot.”  I couldn’t believe it.  Were they serious?  Having a child with Down syndrome means you hit the jackpot?  They all explained to me that kids with Down syndrome were special beyond belief.  They have the power to bring out the best in everyone they meet.  They don’t have the capacity for judgment.  They just love.

Someone told me that the nationwide group of moms who have kids with Down syndrome actually call it “up syndrome” and refer to themselves as “the lucky few.”  If you search #upsyndrome and #theluckyfew hashtags on Instagram, you’ll see some absolutely beautiful pictures and stories from people who have kids with Down syndrome.  You can also purchase “the lucky few” apparel here.

I have a few stories from reaching out to various people that I need to share, as these really transformed my thinking about my situation.

Story 1

The first person I reached out to was my friend Cheryl’s friend Leigh Ann, who has a little boy with Down syndrome.  I emailed her and told her my situation and my feelings of hopelessness, grief and sadness.  She responded almost immediately.  She said, “Hi Ann—I know you’re not there yet, but it’s going to be OK.  It’s going to be awesome.”

I could not have come up with a better reaction if I tried.  This was exactly what I needed to hear in that moment.  I needed to know that things were going to be OK.  Leigh Ann reassured me of that.  We then began emailing back and forth quite a bit.  She knew my situation completely and totally.  She knew exactly what to say.  She had been there.  The unexpected diagnosis at birth.  The shock and sadness.  She knew it all.  We had walked the same path—and I was so grateful.  For the first time in a long time, I was beginning to not feel alone.

Story 2

My friend Meghan texted me when we got home and asked how we were doing.  I was honest with her and told her that I was struggling with Alice’s Down syndrome diagnosis.  She told me that her son was in preschool with a little girl with Down syndrome, and she was just like all the other kids.  She ran around with them, talked with them and played with them like everyone else.  She even said her son has a crush on the little girl with Down syndrome.  This made me so happy.

Then, Meghan told me that she also has a friend named Missy who has a little girl with Down syndrome.  I asked if I could get Missy’s email address.

Just like I did with Leigh Ann, I emailed Missy and told her everything.  She understood exactly how I felt at diagnosis and all of the emotions that came along with it.  She told me that, even though she never expected to have a child with Down syndrome, it has been the biggest blessing in her life.

She then said something that has stuck with me ever since.  Talking about Alice, she said, "God knows what He's doing.  She was made for you."  That resonated with me a ton and it gave me a whole new perspective on having a child with Down syndrome.  Alice was made for me.  Created perfectly in God’s image and made for me.  I didn’t think I could handle something of this magnitude, but there I was, handling it.  Because she was made for me—and I couldn’t let her down.

I wrote, “God knows what He’s doing.  She was made for you.” on a post-it note with a big red marker and stuck it on my mirror, along with a picture of Alice when she was just a few days old.  Now, I see it every day when I'm getting ready for the day and getting ready for bed.  It’s a constant reminder for me that God knew exactly what He was doing—and that Alice was made for us.  She was.

Story 3

My sister-in-law Sarah told me that her friend Nicole also has a daughter with Down syndrome, so I reached out to her too.

Like the other two moms, Nicole completely understood everything I told her.  And she told me such an eye-opening story that it completely changed my perspective on my situation.

When Nicole was pregnant with her daughter, there were no signs of Down syndrome.  When she gave birth, she was just as shocked as we were.  She went through the same emotions that we did: "I can't do this.  This has to be a mistake.  This can't be happening to me.  I'm not equipped to handle this.  I need to get out of the situation.  This isn't something I can handle."

Everything she said was exactly how I felt too.  Nicole said that she started getting really angry about the situation and was mad at God, herself and everyone.  On top of that, Nicole's friend had had a daughter at the same time as her—but her friend was extremely irresponsible and smoked, drank and did drugs throughout her pregnancy.

However, her friend's daughter was born perfectly healthy with no abnormalities at all.  Meanwhile, Nicole had made it a point to do everything "right" during her pregnancy—yet she ended up with a daughter with Down syndrome.  This just added to her pain, frustration and anger.  She sought out a chaplain to talk to about how she was feeling.

She told the chaplain all about the situation and said, "I did everything right in my pregnancy and I'm a responsible person.  My friend is irresponsible with everything and did everything wrong during her pregnancy.  Why am I the one who ended up with the abnormal baby?"

The chaplain told her, "Imagine what would have happened if God gave your friend the baby with Down syndrome.  She wouldn't have been able to handle it.  The baby would not have been well taken care of.  God knew what He was doing.  He only gives these special babies to special people.”

What an amazing perspective.  This changed things for me.  In an instant, I no longer saw my situation as a burden.  Instead, I realized that this God-given child is actually my biggest blessing.  I could use my unexpected situation to make me bitter or better.  And I’m not a bitter person.

I realized then that I am so privileged to have a child with Down syndrome.  God obviously saw something in me that I did not see in myself.  He knew that I am in fact equipped to handle this, even though I never would have believed that before.  Slowly and unexpectedly, Alice was bringing out the best in me.

What an incredible privilege to have this amazing daughter with Down syndrome.

Down Syndrome Association of Central Ohio (DSACO)

When I was in the hospital and Alice was a day or two old, a doctor came into my room and gave me a folder labeled “Down Syndrome Association of Central Ohio.”  He left the folder with me and told me to look through it because it had great information and resources for us.  At the time, I was so mad about our situation that I almost threw it away.

Luckily, I didn’t.  A few days after we got home, I found the folder.  It contained tons of helpful information about Down syndrome.  It said how common Down syndrome actually is.  It wasn’t until recently that Down syndrome really began to get a lot of attention and funding, but it’s with this increase in knowledge that people are realizing how normal people with Down syndrome actually are.  Because I went to private schools all my life, I had no idea that people with Down syndrome and other “abnormalities” are oftentimes integrated right into normal public schools.  And with all of the early intervention, people with Down syndrome are living normal, productive, successful lives.  I was so relieved and excited to read about this.

Then, I found some contact information for people who work for DSACO.  Each of them has a connection to Down syndrome, most of them also having a child with Down syndrome.  I decided to reach out.  The program coordinator, Carey, got back to me very quickly.  Her response was so kind.

“Let me just tell you that you are not alone in your feelings of shock, disbelief, and uncertainty.  Those of us who’ve been where you are will tell you that we felt very similarly upon finding out about our baby’s diagnosis. Every person’s journey is different but most parents experience a level of fear and grief when finding out their baby has Down syndrome. It’s important that you know you are not alone and your feelings are to be understood and even expected.  Just let me encourage you that although times may feel very dark or maybe even lonely right now, they will not always be that way."

It was amazing to me that so many people understood my feelings.  It was a sense of comfort and companionship that I desperately needed at that time.

Carey also told me about DSACO’s Parent Mentor Program.  This program matches parents of a newly-diagnosed child with a parent of an older child with Down syndrome.  I told her I would love to get a mentor.  She matched me with a girl about my age named Crystal.  Like me, Crystal has two young kids—one of whom has Down syndrome.  Also like me, Crystal received an at-birth diagnosis of her daughter’s Down syndrome.

Crystal and I met for dinner a few nights later.  I brought Alice too.  I told Crystal everything I was experiencing and feeling.  She just kept saying, “Yep!”  Everything we had experienced was almost completely the same.  I can’t accurately describe the comfort I felt in having someone who could completely and totally relate to my feelings.  Crystal also told me that raising both of her kids is so similar and that Down syndrome gets a bad reputation, but it’s unwarranted.  Her daughter with Down syndrome and her son without Down syndrome are incredibly similar.  Her daughter with Down syndrome goes to regular school and the other kids even fight over who gets to play with her.

When I came home from that dinner, Tim told me it was nice to see me smile again.  I was finally starting to feel like I could do this.  I may not have all the answers—but I would find them along the way.

Carey also told me about DSACO’s program called Little Buddies, which is a monthly meeting/support group for parents of kids with Down syndrome.  I asked Tim if he would like to go to the next one and he said yes, so we went.  That meeting was so eye-opening and refreshing for us.  We met so many other couples who had little kids with Down syndrome.  We talked and talked and realized that every one of us had experienced the same thing.  It’s truly amazing what a sense of community can do in an unexpected time.  And all the kids were so cute!

More alike than different

The more research I did and the more people I talked to, the more I realized that kids and people with Down syndrome are just that—kids and people.  In general, they are much more like other people than they are different.  Nowadays, most people with Down syndrome are in typical schools, many drive, many go to college and many get married.

Clemson University recently unveiled a program called the Clemson LIFE Program, which is designed for students with disabilities who desire a college experience.  The goal of the program is to help students get a job and live independently.  88% of the graduates find employment in their field.  You can learn more about the Clemson LIFE Program here.

I was also pleasantly surprised to learn about so many programs for kids with Down syndrome.  Many of the girls I’ve met through DSACO said their kids with Down syndrome are in typical sports and clubs (soccer, horseback riding, etc.) but participate in leagues for kids with special needs as well.  When I was little, I always loved my dance class, and Lucy says she wants to do dance too, which makes me so happy.  And I was so happy to learn that Alice will be able to do dance too!  She can enroll in a “typical” dance studio, but there’s also a dance studio that offers classes just for kids with Down syndrome.  You can learn more here.  This studio was started by a woman who has a child with Down syndrome.  She even holds a special ballroom festival for people with disabilities every year, which you can learn more about here.

Learning about all of these things made me so happy.  And I slowly realized, as I held my baby girl each day and night, that she’s no different than any other baby.  In fact, she’s probably more calm and easier than most babies!  She’s just Alice—and, oh yeah, she also has Down syndrome.

Help Me Grow

When I was in the hospital after Alice’s birth, I had so many people coming into my room.  When I eventually left there, I had a stack of papers a mile high.  It was overwhelming to say the least.  But one person that I remember talking to was an early intervention specialist from a program called Help Me Grow.  I didn’t know anything about it then, but I’ve learned a ton about it now.

Help Me Grow is a program that offers evidence-based services to promote healthy growth and development for kids, birth through age three in Ohio.  It is a free, statewide program that helps any child who may need physical therapy, occupational therapy and/or speech therapy.  When the early intervention specialist came into my hospital room and talked to me about the program, I just said, “So how do I sign up Alice?!”  I knew from my limited research about Down syndrome at that time that Alice would probably have low muscle tone and that physical therapy could really help her with that.  So why not start her while she’s young?

Alice’s physical therapy through Help Me Grow started when she was just three weeks old.  We have a physical therapist who comes to our house once a week to do different exercises with her that promote healthy, strong growth and development.  Our physical therapist’s name is Rachel and she is awesome!  She works so closely with Alice to help her muscle tone.  It’s only been seven weeks since Alice started, but we’ve already seen a dramatic improvement.  In fact, Rachel said Alice is a rock star and she actually isn’t delayed in anything except maybe her head control a little bit.  (We’re working on that with lots of tummy time!)  It has been so amazing to work with someone from the start of Alice’s life so we can make sure we give her everything she needs to keep up with her peers.

Lucy loves Alice’s physical therapy sessions and can’t wait for Rachel to come over each week.  She watches each session intently—and, throughout the week, Lucy will say, “Mommy, let’s have Alice do her tummy time!”  She keeps me in check.  ;)

If Alice needs any occupational therapy or speech therapy (or any other type of therapy) down the road, we’ll tackle that when we get there.  Help Me Grow will give us services until Alice turns three, and then they’ll work with her preschool to help her have a smooth transition and continue to give her the services she needs to succeed.

Common health problems for kids with Down syndrome

When Alice was a day or two old, a doctor came into my hospital room and said, “We have great news!  Alice has no heart problems or hearing problems.”  I just stared at him blankly.  Why was this great news?!  This should have just been expected news.  No one has a baby and assumes that he or she will have health problems.  I asked for clarification.

The doctor explained to me that most babies with Down syndrome have a heart problem that requires open-heart surgery in their first year of life.  He also said that many babies with Down syndrome fail their hearing screen.  However, Alice’s tests showed that her heart is in perfect condition, and she passed her hearing screen.  This good news was much-needed relief in my desperate time.

Since then, I’ve realized that some kids with Down syndrome have many health problems, while many kids with Down syndrome have no health problems.  It varies greatly from child to child.

Here are some common health problems of kids with Down syndrome:

·        Heart problems, often requiring open-heart surgery in their first year of life

·        Hearing problems, often requiring hearing aids

·        Vision problems, often requiring glasses at a young age

·        Feeding problems, sometimes requiring a feeding tube

·        Constipation problems

·        Hip problems and risk of dislocation

And here are the health problems that Alice has:

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Yes, you read that right.  Alice has no health problems at all!  We are so incredibly blessed.  So, when I say that Alice is perfectly healthy, I mean it.  Some people look at me like I’m crazy when I say that.  Yes, she has Down syndrome—but her Down syndrome is a condition she was born with and is not indicative of her health.  Her health is perfectly normal.  She’s totally and completely healthy.  We are so fortunate.

Reactions and moving forward

Alice turned two months old the other day.  I can’t believe it!  I am so thankful for everyone who has helped us transition into life not only with two kids, but life with a child with special needs.  As you know, it wasn’t an easy road at first.  We were terrified to say the least.  We had no idea what to do as we began traveling down a road we knew nothing about.

The reactions from people in our lives have been mixed.  No one has had a “bad” reaction, but people simply don’t know what to say or do.  I totally get it.  Some people don’t want to bring up her Down syndrome.  I know this is done because they probably don’t know what to say or don’t want to make us uncomfortable.  But please know this—If you have any questions at all about Down syndrome or anything else about Alice, don’t hesitate to ask us.  I promise we won’t be offended.  Alice does have Down syndrome.  And even though we don’t dwell on it (we actually forget about it most of the time), it is a part of her.  If you want to bring it up, we’re more than happy to talk about it or answer any questions at all.  If you don’t want to bring it up because it’s a non-issue for you, that’s fine too.  We just don’t want anyone to be uncomfortable about it.

Here’s an example.  Alice was born with a few little skin tags on her left ear.  We recently had to get them removed by an ENT.  I asked him if her skin tags on her ear were due to Down syndrome or not.  He said no, they’re not related to Down syndrome, and he sees them pretty frequently on all kinds of kids.  I noticed many people staring at her ear, and I knew they were wondering if the skin tags were due to Down syndrome or not.  My point is: If you ever see something on Alice or notice anything about her and you want to know if it’s because of her Down syndrome or not, please ask us.  We won’t be offended.  We’ll likely know the answer by now, but if we don’t, we’ll find out.

Welcome to Holland

A few hours after Alice was born, a doctor in the hospital handed me a sheet of a paper with a story on it.  The story was called “Welcome to Holland.”  I don’t even think the doctor explained anything.  He just gave me the paper.  I glanced at it for a second and then dismissed it. 

Once we got home and settled in, I found the piece of paper again.  I read it and started crying.  Oh, how accurate this amazing story is.  Here it is:

I am often asked to describe the experience of raising a child with a disability to try to help people who have not shared that unique experience to understand it, to imagine how it would feel. It's like this…

When you're going to have a baby, it's like planning a fabulous vacation to Italy. You buy a bunch of guidebooks and make your wonderful plans... the Coliseum, Michelangelo’s David, the gondolas of Venice. You may learn some handy phrases in Italian. It's all very exciting.

After months of eager anticipation, the day finally arrives. You pack your bags and off you go. Several hours later, the plane lands. The stewardess comes in and says, "Welcome to Holland."

"Holland?!" you say. "What do you mean Holland? I signed up for Italy! I'm supposed to be in Italy. All my life, I've dreamed of going to Italy.”

The stewardess replies, "There's been a change in the flight plan. We've landed in Holland and it is here you must stay."

The important thing is that they haven't taken you to a horrible, disgusting, filthy place full of pestilence, famine and disease. It is just a different place.

So, you must go and buy new guidebooks. You must learn a whole new language. You will meet a whole new group of people you would have never met otherwise. It’s just a different place. It is slower-paced than Italy, less flashy than Italy, but after you have been there awhile and you catch your breath, you look around and you begin to notice that Holland has windmills, Holland has tulips, Holland even has Rembrandts. But everyone you know is busy coming and going from Italy and they're all talking about what a wonderful time they had there. And for the rest of your life, you will say, "Yes, that's where I was supposed to go. That’s what I had planned."

The pain of that will never, ever, ever go away because the loss of that dream is a very significant loss. But if you spend your life mourning the fact that you didn't go to Italy… you may never be free to enjoy the very special, the very lovely things… about Holland. 

We are now in Holland and it is here we must stay.  But Holland is going to be the perfect place for us—and our tour guide is pretty freaking cute.

So what does the future hold?

As I got to know Alice and learned so much about Down syndrome, I realized that my initial reaction was silly.  Yes, it was warranted because of what I thought I knew about Down syndrome at the time.  But now that I know so much more accurate information, I realize that there was really nothing to be afraid of.

There’s a quote from Maya Angelou that accurately describes this.  “Forgive yourself for not knowing what you didn’t know before you learned it.”  I look back on the first few days after Alice’s birth and I wish I would have reacted differently.  I wish I would have held her instead of allowing myself to feel sad and disconnected.  I wish I would have embraced her diagnosis earlier.  But I didn’t know any different at the time—so I have to forgive myself for not knowing what I didn’t know before I learned it.

Today, I find myself asking: When we got her initial diagnosis, why did I feel the way I did?  How could things have been handled differently in the hospital?  What could change in the future so that no other mom feels such sorrow when they receive an at-birth Down syndrome diagnosis for their child?  What can we do so that when a mom receives a prenatal diagnosis of Down syndrome, they don’t automatically think they can’t handle it?

I’m really excited to begin doing whatever I can to change the landscape of Down syndrome.  I have a few things in mind to start.

1.     Change the perception of Down syndrome.

When you talk to a doctor about Down syndrome and then you talk to a parent of a child with Down syndrome, you get two completely different accounts of Down syndrome. 

Many doctors—and other people who are uneducated about it (like I was three months ago)—have a perception that Down syndrome is horrible.  Debilitating.  A burden.  Something that people shouldn’t have to deal with.  But when you talk to the parent of a child with Down syndrome, you hear quite the opposite.  You hear how much of a blessing their child is, how their child with Down syndrome is pretty much just like their other kids and how much their child with Down syndrome has greatly enriched their lives in every possible way.

So where’s the disconnect here?  It seems that medical communities have not caught up with society’s relatively new positive (and realistic) view about people with Down syndrome.  There is so much outdated and inaccurate information about Down syndrome out there.  I can and will work to change that however I can.

2.    Ensure that new moms of kids with Down syndrome don’t feel alone.

When Alice was born and the doctor told us she suspected she had Down syndrome, I can’t tell you how alone I felt.  I knew I had Tim, our families and our friends—so I wasn’t alone in that sense.  But I felt completely alone in the sense that I felt like I was going to have to figure out this journey all on my own.  I had no idea how common Down syndrome is.  I thought I was one of a few hundred people who had ever experienced this.  I had no idea that there are more than 800 families in Columbus alone who have a child with Down syndrome.  That one in every 700 babies in the United States is born with Down syndrome, making Down syndrome the most common chromosomal condition.  Or that 6,000 babies with Down syndrome are born in the United States each year.  If I would have known this, I would not have felt so alone.

If I would have been able to meet other young moms and their kids with Down syndrome while I was in the hospital, I would have seen the normalcy of Down syndrome.  I would have felt so much better about my situation so much sooner.  There’s a gaping hole between what’s being done for these new moms and what should be done for them.

3.    Educate medical personnel on the reality of Down syndrome.

When Alice was diagnosed with Down syndrome, I had a few doctors and other medical personnel tell me they were “sorry” about her diagnosis.  Imagine not knowing one thing about Down syndrome, unexpectedly having a child diagnosed with it and then having a doctor say they’re “sorry” for your situation.  I was in utter shock about everything and I was taking my cues from them.  And they told me they were “sorry.”

I even read a blog recently from a girl who said she received a prenatal diagnosis of Down syndrome, and her doctor immediately told her, “So if you want to go to the abortion clinic…”  How incredibly sad.

I guarantee that if doctors met Alice and many other people with Down syndrome, they would change their tune.  It’s all about education and preaching the reality of Down syndrome.  Sure, Alice probably isn’t going to be a rocket scientist.  But guess what?  Neither are they.

In conclusion (but really just the beginning)

Ten weeks ago, I gave birth to our little angel, Alice.  When I think back to my life before her arrival, I feel like I’m a different person now.  Don’t worry, I still love my celebrity gossip!  But Alice has given me a different perspective on life.  She’s only been here for 10 weeks, but I view things differently now.  I notice people more.  I definitely notice—and appreciate—disabilities more.  I’m more grateful for the people in my life.  I’m less concerned with “things” in my life.  My heart is more open.  I love Tim so much more than I ever thought I could.  I love my daughters with everything I have.

What I thought was going to be a struggle is actually only going to make me stronger.  It’s only been 10 weeks and Alice has already done all of this.  Just imagine what she’ll do the rest of her life.

When I think about my future, I feel so incredibly excited now.  I’m so blessed to have the life that I do.  My heart is so thankful that God chose me to be one of “the lucky few” who gets to experience the love of a child with Down syndrome.  What a gift I have been given.

When Alice was first diagnosed with Down syndrome, I thought God abandoned me.  Now I realize that He was right there in our hospital room, watching over us—and orchestrating everything perfectly according to His plan.  Alice and her diagnosis are not a burden or a mistake.  She is simply the most beautiful gift that God made for us.

Tim and I chose Alice’s name before she was born, but she has truly introduced us to a whole new wonderland.  And I’m the lucky girl who gets to be her mommy.